Dementia itself is not a disease, but rather a set of symptoms that accompany specific diseases.  Dementia is a general term for the loss of memory, language and recognition that is severe enough to interfere with everyday life. Researchers believe dementia may be caused by a combination of genetic and environmental factors. Some diseases that cause dementia are irreversible and include Huntington’s disease, Pick’s disease, Parkinson’s disease, Lewy body dementia, multi-infarct dementia and Alzheimer’s disease (AD), the most common form of dementia, accounting for 60-70 percent of the diagnosed cases.

An estimated 4.5 million people in the United States have dementia. On average, patients with AD live from 8 to 10 years after they are diagnosed, although the disease can last up to 20 years. The disease usually begins after age 60 and the risk increases with age. Younger people may get AD; however, it is much less common. Ten percent (10%) of Americans age 65 and older have AD and it affects fifty percent (50%) of Americans age 85 and older. AD is one of the most feared mental disorders because of its progressive and relentless attack on the brain. Despite its prevalence, dementia may go unrecognized or be misdiagnosed in the early stages of the disease.  

According to the Alzheimer’s Association and current national studies, there are many reasons to support the early detection of AD.  An early diagnosis is crucial because that is when the most can be done to slow the progression of symptoms. In addition, early treatment can have a considerable effect on maintaining a patient’s current level of functioning. An early and accurate diagnosis can also help to identify reversible conditions that may mimic dementia such as depression, medication side effects, substance abuse, vitamin deficiencies, dehydration, bladder infections or thyroid problems. An initial  assessment can avoid the trauma of a diagnosis of dementia where it does not exist. It also prevents unnecessary and possibly harmful treatment resulting from misdiagnosis.

Other reasons include:

• Identifying the cause of dementia leads to proper care and allows patients a greater chance of benefiting from existing treatments
• Early diagnosis can help resolve the anxiety that accompanies noticeable, yet unexplainable changes in behavior
• Educating persons with dementia and their caregivers gives them time to develop advanced care planning
• The quality of life for both the patient with AD and the family can be maximized.
• The earlier the treatment, the better the chance of a favorable response to treatment, the longer the delay of progressive symptoms and the less financial cost overall.

The early identification process, currently  recommended by the Chronic Care Network for Alzheimer’s Disease, includes two key tools to identify people who may have dementia.

Tool 1: Education and Awareness Materials which recommend the use of triggers that signal possible dementia and include the Ten Warning Signs of Alzheimer’s Disease.
Tool 2: Family Questionnaire which aims to collect data from family members who are often the best historians and are more likely to be aware of the signs and symptoms (of possible dementia) that are not apparent to the medical staff.

The Family Questionnaire is designed to help identify patients with memory problems that might go unnoticed by clinicians. It consists of five simple questions:

• In your opinion, does your loved one have problems with any of the following challenges and how often?
• Repeating or asking the same thing over and over?
• Remembering appointments, family occasions, holidays?
• Writing checks, paying bills, and balancing the checkbook?
• Deciding what groceries or clothes to buy?
• Taking medications according to instructions?

The information collected from these tools can be shared with the patient’s primary care physician and then a determination of need for further testing or a referral to a specialist can be made at that time.
 
Testing:
There is no single diagnostic test to detect whether a person has Alzheimer’s disease.  However, diagnostic tools and criteria have been developed in recent years to make a clinical diagnosis of AD with an accuracy rate of 85-90 percent.                                                                                                                     
 
The factors used to complete a diagnosis include:
•Medical History
•Mental Status Evaluation
•Physical Examination
•Neurological Examination
•Neuropsychological Evaluation
•Brain Scans
•Laboratory Tests

The assessment of AD might begin with a memory screening test in the primary care physician’s office and then the patient may be referred to a neurologist, neuropsychologist, a geriatric psychiatrist or other specialist trained in the diagnosis of AD for further testing.  Caregivers and family members are essential to the process of diagnosing early-stage Alzheimer’s disease. They may be able to supply valuable information and validate or deny the patient’s own reports.
 
A diagnosis of Alzheimer’s disease usually falls into one of three categories:

1.  Probable Alzheimer’s—indicates a physician has ruled out all other disorders that may be causing the dementia.
2.  Possible Alzheimer’s—indicates the presence of another disorder that could be affecting the understood progression of Alzheimer’s. The disease process appears different than what is normally seen; yet Alzheimer’s disease is still considered the primary cause of dementia symptoms.
3.  Definite Alzheimer’s— this diagnosis can only be made at the time of an autopsy because it requires examination of actual brain tissue. An autopsy can confirm the presence of senile plaques and neurofibrillary tangles in the brain, which are the characteristic lesions of Alzheimer’s, to diagnose the disease with 100 percent accuracy.

Delay of Diagnosis:
Amazingly enough, there is a significant percentage of caregivers who are told, upon bringing their spouse or relative to the physician, that their decline is due to “normal aging.” We now know that dementia is not a normal part of the aging process.

It is strongly recommended that persons experiencing any dementia-type symptoms should undergo diagnostic testing as soon as possible. A delay in diagnosis allows for a missed opportunity for treating the patient and also increases the chances for other problems and demands to multiply for the caregiver. For example, since AD affects memory, patients are at risk of not complying  with the treatments that are necessary for problems such as diabetes, high blood pressure, mental health disorders and infections.  A health crisis can then develop, compound the effects of dementia and lead to emergency care or hospitalization.
 
Caregivers may initially hesitate to bring a loved one with dementia to the physician.  Researchers at the University of Portland found that it takes an average of 30 months from the time family members notice the first changes and symptoms of dementia for the person to be diagnosed with AD. Reasons cited by caregivers were: lack of knowledge about AD, they did not imagine that the changing behavior was part of an illness, they were unsure what type of doctor to see or how to describe symptoms, they felt overwhelmed with the burden of caregiving or they feared that the illness was truly AD. Many caregivers have reported that prior to the diagnosis, they were nearly overcome with anxiety as they watched their loved one deteriorate. Once the diagnosis was made, they felt a great sense of relief and were finally able to name the disease and move forward toward a plan of care.
 
There are several other reasons that contribute to a delayed diagnosis of AD. Early symptoms are often disregarded, mistakenly attributed to aging or even misdiagnosed.  Sometimes people with dementia are unwilling to have their mental abilities evaluated, are defensive, or in denial of the changes that are occurring in their lives.  Physicians may not feel comfortable dealing with memory loss issues, may not be trained to administer cognitive tests or are reluctant to place a patient in an uncomfortable testing situation. Patients with high intelligence may be able to score above average on screening tests (despite cognitive decline) and compensate for or even mask their symptoms during the office examination, thus leaving the physician without sufficient evidence to provide a diagnosis. This is the point where caregivers play an important role and can provide the most valuable data to support the possible diagnosis of Alzheimer’s disease.
 
Treatments and Medication Benefits:
Although there is no cure for AD, new and improved treatments are on the horizon and offer hope. Most health professionals feel that the best plan of treatment includes a combination of medication, changes in lifestyle and support, along with a goal of managing symptoms that affect memory, thinking and behavior. The regional director of the Alzheimer’s Association of Minnesota-North Dakota points out that there is a growing interest in the use of non-medical interventions that may be effective on their own or used in combination with medications.  These interventions may include memory and communication aids, speech therapy, behavioral therapies, memory stimulation therapy, exercise, adequate sleep and education. The environment also strongly influences the health and capabilities of persons with AD; thus, it is important for caregivers to pay attention to safety factors, reduce stimuli and adjust the surroundings to accommodate the disease.  
 
AD changes the brain in many ways, which results in a decrease of acetylcholine levels. It is believed that acetylcholine is a chemical messenger that is important for memory, thought and judgment. The US Food and Administration currently approves five prescription drugs, yet only three are actively marketed for the treatment of mild to moderate AD.
 
According to  the Mayo Clinic, these medications are referred to as cholinesterase (ko-lin-ES-tur-ase) inhibitors and seem to improve the effectiveness of acetylcholine, either by increasing the amount in the brain or strengthening the way nerve cells respond to it. The top three cholinesterase inhibitors are Aricept, Razadyne and Exelon. They have all been effective treatment options in clinical trials. The other two medications are: Cognex, which has been on the market since 1993 but is rarely prescribed, and Namenda, which is the first drug approved by the FDA to treat moderate to severe dementia and may be co-prescribed with cholinesterase inhibitors. Treatment with medications has revealed delays in nursing home placements and improvements in cognition and functional abilities in many patients with AD.
 
Doctors usually start patients on a low dosage of medication and then gradually increase the dosage based on the tolerance level of the patient.  According to a journal of the American Academy of Family Physicians, the above named medications have a low incidence of serious reactions, but they do have common side effects that can occur such as nausea, vomiting, diarrhea or weight loss.  Tolerance to these medications often develops over time. Cholinesterase inhibitors must be taken regularly and in a sufficient dosage to benefit the patient. Interruptions of the drug treatment over time will result in sustained or irreversible cognitive decline. If a patient is unlikely to follow a drug regimen or has an illness that could interrupt the drug regimen, benefits will decrease and patients may face greater side effects.  The healthcare provider should consult with the patient and the family to decide together on the best plan of treatment. Pharmacists are also a valuable resource for medication information.

It is important to understand that medication alone cannot stop the disease and medications do not work for everyone. For those who are helped, the effects may be only modest or temporary. Treatment with medication may help prevent symptoms such as depression, sleeplessness or wandering from becoming worse for a period of time and can help keep behavioral symptoms under control. Periodic monitoring and testing of a patient’s functional and cognitive abilities is also recommended.  These results may offer encouragement to the patient’s family and can serve as a guide for doctors, patients and families in planning for the future.
 
 
Clinical Trials:
The best evidence of progress in AD research lies in the growth of clinical testing of treatments, prevention of the disease and diagnosis. This alone gives patients and families a reason to hope. Advances in our knowledge and understanding of AD have also led to the development of many new drugs, diagnostic tests and treatment plans. Scientists now recognize the need for earlier detection of AD and are devising new brain imaging techniques and lab tests that could improve diagnosis. One landmark trial that began in 2005 is the Alzheimer’s Disease Neuroimaging Initiative. The goal of this trial is to determine whether standardized brain images combined with laboratory and psychological tests may offer a better way to identify those at risk for Alzheimer’s, track disease progression and monitor treatment effects.
 
Clinical trials are the final testing ground for new treatments that are currently under investigation. Each trial represents the results of years of scientific thought, observation, and data analysis and is only possible through the participation of patients and their family members. Clinical trials are the principal way that researchers can discover whether a treatment is safe and effective for patients, especially for those in the early stages of the disease. Trials take place at private research facilities, specialized AD research centers, teaching hospitals and even at physicians’ offices. Taking part in a clinical trial can be a big step for both the patient and the family so it’s necessary to discuss the expectations and pros and cons of participation with the clinical trials staff.
 
There are two kinds of drug trials available:

Treatment trials with existing drugs that assess whether an already approved drug may be useful for other purposes. For example, an arthritis treatment may help in the prevention of AD.

Treatment trials with experimental drugs or approaches to discover whether a new drug or treatment approach may help improve memory function, decrease symptoms, slow the progression of AD or prevent it altogether. Each one of these clinical trials includes up to three phases. Once these phases are complete and investigators are satisfied that the treatment is safe and effective, the research team can submit its results to the Food and Drug Administration (FDA) for review.
 
When a person signs up for a clinical trial, they are asked to sign an informed consent form to ensure that they are protected and well cared for during the study. If a participant is unable to provide informed   consent because of memory loss, it is still possible for an authorized representative (usually a member of the family) to give permission. Next, patients go through a process of screening to see if they qualify and can safely participate before they proceed with the study. Although clinical trials may not produce miraculous results, many participants believe that even if the benefit to them is small, they are making a valuable contribution toward future research.  Family members have also found that the best benefit of participating in a clinical trial is the regular contact with the research team.  The team can be a link to education, provide advice on the emotional and physical aspects of AD, and offer supportive and helpful information.
 
The amount and variety of clinical trials underway are a sign of the intensity of research to seek solutions for a disease that robs the mind and takes away the essence of a person’s life. Current clinical trials are available on the Internet under www.alz.org or by contacting the Alzheimer’s Association or the Alzheimer’s Disease Education and Referral Center (ADEAR) at 1-800-438-4380 (a service of the National Institute on Aging).
 
Support for Caregivers:
Caring for a person with AD can be likened to driving on an unfamiliar road, riding a roller coaster or even walking on a tightrope. It can be an incredibly stressful ride, yet rewards can also be visible. The key is to balance your own needs against those of the person you are caring for day to day. Many caregivers find that they are stronger than they ever thought possible and that they feel rewarded knowing they have stayed committed to helping a loved one during the difficult years.
 
Caregiving can produce a great deal of stress that can lead to physical decline and emotional exhaustion. The health of caregivers is at risk, yet they often become the “hidden patients” while focusing all of their attention on the person with AD. Caregivers need to keep their own health in check and visit their doctor on a regular basis. Support systems must also be alert to signs of caregiver burnout or depression and plans must be made to provide respite to the caregiver. No one can do it all alone. It is heartbreaking to watch a loved one go through the stages of Alzheimer’s disease and caring for them requires an abundance of   strength.  Asking for help and taking care of yourself cannot be overemphasized. 
 
 
The Alzheimer’s Association assistance is available nationwide and offers a wide variety of programs, educational materials and support services to persons with AD and their caregivers. Many communities have a local or regional chapter and offer regular education and support group meetings. The Alzheimer’s Association also provides:

A 24-hour, tollfree (multilingual) Information Helpline (800) 272-3900 that links callers to information about AD, treatments, caregiving strategies and local programs.

The nation’s largest Alzheimer’s library including books, journals, cassettes, videos and CDs that can be obtained through interlibrary loans at your local library.
Internet support at www.alz.org, including online chat rooms, research updates, brain health tips, the new CareFinder program that assists caregivers in planning care and finding support and the Safe Return program, which helps families locate a loved one who has wandered off or gotten lost.  This Internet site is set up to help families and caregivers make informed decisions.

Care Consultation— one of the core services of the Alzheimer’s Association (available in most states) that assists the person with AD or related dementias and their family in planning for, and dealing with, all aspects of the illness experience.
 
In addition to contacting the Alzheimer’s Association, consider care options such as in-home respite care, adult day programs, home care services, delivered meals programs, or chore services. Keep a personal journal of your journey or a medical journal to record helpful information for yourself and the physician. Continue with activities that are enjoyed. Maintain a network of support and communicate your needs to family members, friends, volunteers, and organizations to avoid isolation. Join a caregiver support group to find hope, gain valuable information from people who understand your position and learn new ways to cope with the challenges you face.
 
Alzheimer’s disease impacts the whole family. Like a pebble thrown into the water, the ripples of the disease touch the lives of everyone. The signs and symptoms of AD can’t be ignored! Early detection and current treatments can help maintain or even improve memory, thinking and behavior problems plus support the quality of life for persons with AD and their caregivers.

 

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